{"id":7944,"date":"2025-01-30T08:05:34","date_gmt":"2025-01-30T13:05:34","guid":{"rendered":"https:\/\/www.silvercentury.org\/?p=7944"},"modified":"2025-02-13T14:01:23","modified_gmt":"2025-02-13T19:01:23","slug":"diagnosing-dementia-with-lewy-bodies-2","status":"publish","type":"post","link":"http:\/\/78.142.243.82\/~silvercentury\/2025\/01\/diagnosing-dementia-with-lewy-bodies-2\/","title":{"rendered":"Diagnosing Dementia with Lewy Bodies (Part 2)"},"content":{"rendered":"

This is the second of two blogs about Lewy body dementia. <\/span><\/i>You\u2019ll find <\/span><\/i>part 1 here<\/span><\/i><\/a>.<\/span><\/i><\/p>\n

Dementia with Lewy bodies (DLB) is a degenerating brain disease that causes dementia and symptoms of Parkinson\u2019s disease. As I wrote in part one, it\u2019s frequently misdiagnosed because it\u2019s so little known. Also, it shows up with a wide variety of symptoms. Some are distinctive and some mimic other dementias. <\/span><\/p>\n

When primary care physicians screen for dementia, they are mostly looking for a decline in short-term memory\u2014an early, prominent symptom of the most common dementia, Alzheimer\u2019s.<\/span><\/p>\n

In contrast, in DLB, the earliest cognitive change is a decline in executive function\u2014that is, the ability to plan and carry out an action. Someone developing DLB<\/span> will have trouble organizing, planning, reasoning, focusing their attention and doing things, like getting dressed, that need to be done in a certain sequence. Also impaired are visual abilities such as depth perception and eye-hand coordination, and to a lesser extent, memory. <\/span><\/p>\n

The challenge is that <\/span>initially<\/span><\/i> memory problems and these other problems in thinking look very similar. Later, they are more distinct.<\/span><\/p>\n

At that point, you might see a woman with Alzheimer\u2019s who can still drive her car but can\u2019t find her way home. The procedure for operating the car is  in her long-term memory, which she can still access. Wayfinding depends on storing a short-term memory so it lasts long enough that she can use it, which she can no longer do. <\/span><\/p>\n

A man who has dementia with Lewy bodies can\u2019t start his car in the first place, because he\u2019s lost his grasp of the sequence of the steps he must take to start the car.<\/span><\/p>\n

(These examples are based on cases in an excellent book, <\/span>A Caregiver\u2019s Guide to Lewy Body Dementia <\/span><\/i>[2020]<\/span>, <\/span><\/i>by Helen Buell Whitworth and James Whitworth.)<\/span><\/p>\n

In their very <\/span>l<\/span>ate stages, the two diseases again look more alike. <\/span><\/p>\n

To make matters worse, there is growing evidence from autopsies that half of all DLB cases show evidence of Alzheimer\u2019s pathology as well. Thus, half of all people with DLB may have symptoms of <\/span>both<\/span><\/i>.<\/span><\/p>\n

In that case, does it matter which disease or diseases someone has?<\/span><\/p>\n

Yes. It\u2019s very important to know\u2014and know early–if dementia with Lewy bodies is playing a role, because DLB makes people very sensitive to medications, including many that would be the drugs of choice for their most troubling symptoms.<\/span><\/p>\n

Two of these symptoms can appear early in DLB, and both increase the chance that drugs dangerous for people with DLB will be used if a doctor has not made the correct diagnosis. <\/span><\/p>\n

One is rapid eye movement (REM) sleep disorder, named for the movements our eyes make while we dream. <\/span><\/p>\n

Normally, our muscles are temporarily paralyzed during REM sleep, to keep us from acting out our dreams. For reasons not fully understood, this paralysis sometimes doesn\u2019t happen in diseases caused by Lewy bodies. When someone with DLB has a dream full of action, their thrashing arms and legs put them and their bed partner at risk of injury.<\/span><\/p>\n

REM sleep disorder is not a part of Alzheimer\u2019s. That makes it a red flag for DLB, even when it precedes, as it often does, any other symptoms.<\/span><\/p>\n

Hallucinations are the second symptom that can show up early in dementia with Lewy bodies and that carry the risk of being treated inappropriately if DLB has not yet been diagnosed. Generally, the DLB hallucinator sees realistic but benign figures, like children or small animals, and isn\u2019t frightened by them. But there is wide variation.<\/span><\/p>\n

Millie, a 70-year-old woman, had early dementia with Lewy bodies. One day, when her daughter called, Millie told her, \u201cGrandpa\u2019s sitting in the blue chair in the living room. He\u2019s been sitting there all day.\u201d<\/span><\/p>\n

\u201cDo you mean Dad?\u201d her daughter asked.<\/span><\/p>\n

\u201cNo. Grandpa Freddy.\u201d<\/span><\/p>\n

\u201cBut that\u2019s impossible. He\u2019s been dead 60 years!\u201d her daughter protested.<\/span><\/p>\n

\u201cWell, I can\u2019t help that. There he is,\u201d Millie calmly told her.<\/span><\/p>\n

In contrast, if a person with Alzheimer\u2019s develops hallucinations it will be much later in the disease, and they are not likely to be as benign.<\/span><\/p>\n

Sometimes, dementia with Lewy bodies is mistaken for a psychiatric illness because it can cause anxiety, depression and agitation, as well as hallucinations and delusions. <\/span><\/p>\n

Before my friend\u2019s mother, Suzy, was diagnosed with DLB, she was treated for anxiety and agitation with diazepam (Valium). It caused such deep sedation, everyone was afraid she might not come out of it. <\/span><\/p>\n

The doctor took her off diazepam, but when the sedation wore off, her agitation returned, along with disturbing hallucinations, so the doctor, still not realizing she might have dementia with Lewy bodies, gave her haldoperol (Haldol), one of the most dangerous drugs for anyone who has dementia with Lewy bodies. <\/span><\/p>\n

Suzy developed severely rigid muscles, and her thinking declined precipitously. Once off the haldoperol, she improved but was never again able to live independently.<\/span><\/p>\n

G<\/span>iven the sometimes tragic consequences that can result from DLB not being diagnosed early enough, if you have reason to be concerned that you or someone you love may have it, there\u2019s comfort in knowing that you <\/span>can<\/span><\/i> get an answer. <\/span><\/p>\n

Medicine has reached a consensus on the symptoms required to make a diagnosis. I will list the symptoms in order of their importance and then tell you where you can go to get an accurate diagnosis.<\/span><\/p>\n

Besides dementia, which is the essential feature, at least two of these four core symptoms must be present:<\/span><\/p>\n